Let's Talk... ADVICE FROM SAIGE! - Vascular Birthmarks Foundation Forum
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  #1  
Old 11-09-2002, 12:46 AM
LUVmeLUVmyBrthMark
 
Posts: n/a
Default Let's Talk... ADVICE FROM SAIGE!

Do people ask you questions about your birthmark ,does it bother you??? Do you have any questions confusions or need an opinion? PLEASE feel free to have a private chat with me, Saige! I would *really enjoy communicating with you about your experiences! Even if you think that it's a silly question go ahead and ask because most likely, I'll have an answer!!!
Either reply to this post or e-mail me at LuvMeLuvMyBrthmark@yahoo.com THANK YOU!
* * * * * * * *
* * :-*Love, Saige


~CHAT WITH SAIGE~
[[Don't Feel Embarrassed!!!]]
*I UNDERSTAND>>>I HAVE ONE TOO!*
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  #2  
Old 11-23-2002, 06:05 AM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 538
Default Re:~LET'S Talk, ADVICE FROM SAIGE~

Hi Saige.

This is Hank.

I was wondering how old you are?
I am twenty years old and I have had PWS's, and Vascular Malformation's (hemangeoma's) all over my head and I have had them my hole life. I have had laser treatment for fourteen yeas and I am on my third machine. That is how face technolgy has rose.
The best way I have found to let everybody know what it is. I just ecucate them. Mostly children thow.
There parents get mad at the child for stareing or asking. I just tell the parents that there children probably have not had sience class yet and are just curess about what is on my face.
If is different when a adult asks me (what the hell happen to you) I tell them what it is and told them that they should have learned it in school that is if you they went. Then I laugh and walk away not buying anything if I was in there store.

I know it is mean but some of the people are so rude.
Or do not think before they say.

I will talk to you soon.

Hank B

What do you think?

Do you agree?

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  #3  
Old 06-24-2003, 10:21 PM
kristy
 
Posts: n/a
Default Re:~LET'S Talk, ADVICE FROM SAIGE~


My birthmark is a very dark brown color and is white actually turning white. I get asked about it all the time. It's so embarrassing. Everyone asks if I have been burned. It really bothers me but I guess it's just part of life. But as an 18 year old, it makes me very self-concious.
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  #4  
Old 01-23-2004, 01:04 AM
super girl
 
Posts: n/a
Default Re:~LET'S Talk, ADVICE FROM SAIGE~

HI there,
I too Have a very large V. malfurmation on my back.. its puffy and sometimes becomes very irritated. It made be very self concsious when I was younger, but now it still does only sometimes. The truth is that most people are very curious, and sometimes you should not get their curiousity confused with disgust or even judgement. It must be so difficult for those with facial birth marks like this, but I cant say anyting but, be brave to you. People who love you will love you regardless of what you look . No body is perfect and there are far worse perdicaments to be in in life than what you are going through, not to minimize your experience in anyway.
Hang in there and dont let ignorance keep you unhappy. Your life has meaning and you are loved, never forget that.
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  #5  
Old 01-23-2004, 03:12 PM
eprmo eprmo is offline
Senior Member
 
Join Date: Dec 2003
Posts: 149
Default Re:~LET'S Talk, ADVICE FROM SAIGE~

Dear Supergirl,

I love what you wrote!!!!

I have always tried to talk to my daughter in the same regard ..
She is 14, and does (hopefully) feel the same way. She has never held back doing anything because of her birthmark,as a matter of fact, she is going though with the procedures we have set up, because we are encouraging it..
Your strength is a motivation and encouragement for everyone.

Elissa
__________________
Elissa Rifkin
VBF Developmental Specialist
psyelectro@aol.com
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  #6  
Old 04-25-2004, 03:46 AM
Sierra Girl
 
Posts: n/a
Default Re:~LET'S Talk, ADVICE FROM SAIGE~

My daughter doesn't like to write but had some questions for me. She is 15 and has a vascular malformation on the back of her jaw near her ear. It is transiant, meaning it swells up when she leans over or is upside down or during some types of activities like playing her saxaphone. She wanted to know if anyone had one similiar to her and if it ever has changed, gotton smaller or bigger. She thinks it may be getting smaller she hopes so. People ask her about it and she calls it her "bump" and they think it is kind of weird. I can tell she does get a bit embarrassed by it. If they ask if she was hurt she just tells them it is a cluster of veins that fill up with blood sometimes and that she has had it since she was born. She is lucky that the bump is not terribly noticible but sometimes it hurts or is uncomfortable when swollen.
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